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Autism can encompass other issues as well, including sleep disturbances, gastrointestinal inflammations and sensory dysfunction (heightened sensivity to lights or certain kinds of noises), although the research jury is still out on whether these problems differentiate people on the spectrum from those with other developmental disorders. With the exception of Rett syndrome, the ratio of boys diagnosed to girls is more than 4 to 1. Beyond that, autism is unique in every individual diagnosed. “You have people who are profoundly mentally retarded and those who are brighter than you and I, individuals who don’t talk at all and individuals who talk too much, those who are extremely socially isolated and those who seemingly can’t stop trying to engage others,” says Klin. “They have difficulties navigating the social world in areas you and I take for granted—living independently, taking care of daily affairs, implicit rules of engagement with others. The explicit and structured they do well with.”
In 2004, Robert and Suzanne Wright’s 3-year-old grandson, Christian, was diagnosed with autism. Not an unusual development, of course, except in this case it happened to a Fairfield couple with a long history of philanthropic endeavor—Bob sits on the boards of the Damon Runyon Cancer Foundation and Manhattan’s NewYork-Presbyterian Hospital and is a recipient of the Simon Wiesenthal Center’s Humanitarian Award, while Suzanne works with the Make-A-Wish Foundation of Metro New York and the Laura Pels Foundation—and considerable media power: Bob is the former vice chairman of General Electric and CEO of NBC Universal.
Both were, to use an apt piece of British slang, gob-smacked by the diagnosis. By age 2, Christian had developed a significant vocabulary and been potty-trained. “He was always very attentive to what was going on, all smiles,” says his mother, Katie Wright-Hildebrand. “He crawled on time, was socially engaged and very loving. He started talking at nine months, walking at 12 months. When he did No. 2 in the potty, he was so proud that he wanted to leave it for his dad to see when he got home. Six months later he was smearing his feces on the wall and eating it, having no idea what he was doing.”
A series of pediatricians told Katie not to worry: Christian was just having temporary adjustment difficulties because a younger brother had come along and his family had moved. “But we couldn’t believe such a drastic change was ‘normal,’” says Suzanne Wright. Finally, they brought the boy to New York-Presbyterian Hospital, where they got the diagnosis—and learned just how little we all know about the disorder. “At that point the prevalence was 1 in 166, which was horrifying,” says Suzanne. “We couldn’t believe that something that was affecting children in these numbers was not on the national radar screen.”
In February 2005, the Wrights established Autism Speaks, which has since become an international beacon of autism activism and awareness. It’s raised more than $60 million for autism research in the last year alone, and already committed more than $70 million to related projects in its three years of operation. “We’ve also gone into family services, where we distribute grants of $10,000 to $25,000 to local community programs,” says Bob Wright. It’s made even greater inroads in the area of grassroots education through an exceptionally information-rich Web site (autismspeaks.org), an award-winning TV PSA campaign mounted in collaboration with the Ad Council, and special strategies like the creation of the United Nations’ first World Autism Awareness Day on April 2, 2008.
The organization has also lobbied hard for federal legislation. Autism Speaks pushed for the passage of the Combatting Autism Bill, signed by President George W. Bush in 2006, which authorized $930 million in expenditures over a five-year period. “The National Institutes of Health has a $30 billion budget and was only spending $30 million to $40 million on autism—or one-tenth of one percent,” Wright points out. “That made us furious.”
Since then, the organization has thrown its support behind the Disability Savings Act—introduced in Congress this year by Connecticut Sen. Christopher Dodd, which “allows families with members who have disabilities to save money on a tax-efficient basis, the way people can do for college,” Wright says—and behind the state-by-state initiative to pass insurance bills that will establish HMO coverage for diagnosis and treatment. Connecticut passed a bill this year, HB 5696, that requires health insurance policies to start coverage of physical, speech and occupational therapy to treat autism on or after Jan. 1, 2009, if the policies cover these services for other disabilities.
Count the Wrights among those who are disappointed that the bill passed is significantly less ambitious than the one introduced. “It’s a classic case of the ‘glass half-full,’” Bob Wright says, but he hopes 5696 will be amended next year to match more progressive bills passed in other states. “Autism is a wrenching financial situation for families. It’s not unusual for couples to take out second and third mortgages to meet the medical bills.” For good reason—they may find themselves spending $100,000 a year and up on available services.
As you may have guessed, a crazy quilt of interventions has been used to treat autism, from speech and occupational therapies to antipsychotic medications, vitamin regimens and special diets. Just as every person with autism is unique, there isn’t any “magic pill” that helps them all. Sara Reed, vice president and executive director of Guilford’s Autism Society of Connecticut (ASCONN) and mother of a 14-year-old boy on the spectrum, says, “I’d love to be able to say to other parents, ‘Tell me about your child and I’ll give you a prescription.’ But there isn’t one.”
The only universal seems to be that the earlier the intervention, the better the prognosis. Reed’s own story is a perfect illustration. “My ex-husband has twin brothers in their 40s who are autistic, who never received any therapies and are not in a good place, tucked out of sight in a group home. Not long after our son was born, his father noticed problems that were disturbing: delayed speech development, difficulties relating to us, a fascination with phenomena like dripping water.” Before he reached one year of age, his pediatrician had him evaluated at the Yale Child Study Center, and Reed embarked on what she calls an intensive “cocktail” of treatments. “If you met my son today, you probably wouldn’t pick up that anything is wrong.”